Am I A Defect Or Abnormality?

By Tony Briffa

President, AIS Support Group Australia.

For centuries humanity has been shaped by words and language to convey ideas, perceptions, attitudes and feelings and this is our primary form of communication. In particular, sense of self worth, self image and self esteem are all affected by the use of positive or negative descriptive language. Aside from individual communication, language reflects the general attitudes of society, which language on the one hand if negative, acts as a barrier for those with any level of disability and conveys negative stereotypes and misconceptions. Positive attitudes on the other hand can help society and those with various conditions by simply being considerate about the tone of what is said about people affected by these conditions and the conditions themselves. Most importantly, the use of appropriate words and language can actually change attitudes toward people with disabilities by referring to them and their conditions accurately. The use of appropriate language by medical and associated health service professionals is especially important.

People with various conditions and their carers deserve to be treated with respect and dignity, and the following simple points are intended to illustrate a few examples where appropriate and respectful language will help a person feel more positive about themselves or their child.

• Words such as ‘defect’, ‘victim’, ‘disease’, ‘sufferer’ and ‘abnormal’ are highly offensive and should never be used to describe a person with a disability or condition. Instead words such as “birth variation”, “medical condition”, “person affected by (condition)” and “person with (condition)”.
• When speaking about someone with a disability or condition, only refer to the condition if it is necessary. Remember the person is the most important thing, not the disability or medical condition. Whilst a person may make an interesting case or research subject, they are much more than the sum of their disability or medical condition.
• Language should emphasize the person first and the disability second. For example, rather than referring to someone as being ‘a Down’s Syndrome boy’, say ‘the child has Down’s Syndrome’. Likewise, rather than referring to someone as “intersexed”, refer to them as “someone with an intersex condition”.
• Language that is negative and inaccurate should also be avoided, particularly when a condition is first diagnosed. First impressions will form a basis upon which parents will continue to consider their child and those perceptions will be passed onto the child as parent/child interaction takes place. In the case of a child with a disability or medical condition, the parents will have a more specialised carer role and so their perceptions of their child will have considerable impact on the child through disability or condition specific care.
• Parents are also more likely to absorb important information from the outset if they are not "shocked" by the language used. Telling a couple for example, that their child was born with a ‘congenital defect’ or ‘congenital abnormality’ is considerably different to telling them their child was born with a particular condition but is otherwise healthy. Many parents may not hear important information associated with initial diagnosis because of inappropriate language and often it is this information which forms the basis for the understanding of their child’s disability or condition.
• Language that suggests a course of treatment without first providing complete and accurate information about the advantages and risks of that and other treatment options is unethical. Parents and, where appropriate, children should be given full and frank explanations about all possible treatment options. If you don’t know, say so and find out rather than guessing or hypothesising.
• Ask check questions to ensure the information has been understood up until that point, before providing more information. This will ensure you are building information and understanding on a sound foundation, rather than continuing to provide information long after a person has given up trying to understand.
• Whenever possible, never refer to a person present in the “third person”, this objectifies them and more often than not is easily avoided.

Like many things, use of language is habit forming. This is particularly true of frequent use of technical language, such as is often used by the scientific and medical communities. Given the impact language may have and the lasting impressions it may form, the onus is on any medical professional or associated care provider to choose their words carefully. To do this may take a deliberate effort to avoid habitual language we recognise as potentially damaging, but improved relationships and quality of information communicated makes the effort well worth it. As Mother Teresa said, “kind words can be short and easy to speak, but their echoes are truly endless”.